| 1. |
- Weiber, Ingrid, et al.
(författare)
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Children born to women with intellectual disabilities : 5-year incidence in a Swedish county
- 2011
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Ingår i: Journal of Intellectual Disability Research. - : Blackwell. - 0964-2633 .- 1365-2788. ; 55:11, s. 1078-1085
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Tidskriftsartikel (refereegranskat)abstract
- Background: Families with parental intellectual disabilities are likely to need support in achieving a decent family life. In order to accurately plan for such support services, society needs data regarding the occurrence of those parents and their children. The aim of this study was to investigate the five-year incidence of children born to women with intellectual disabilities in a county in Sweden. Methods: Women born between 1975 and 1989 were identified from school registers for children and adolescents with intellectual disabilities in the county of Blekinge. The women’s personal identification numbers were, in 2010, linked and matched with the Swedish Medical Birth Register. Results: In total, 98 women with intellectual disabilities were identified. Nine of these had given birth to children; one woman to two children and eight women to one child each. The ten children were born between 2004 and 2008. Conclusion: The incidence rate calculated as a result of the present study indicates that approximately 2.12 per thousand children are born per year to women with intellectual disabilities. For the whole of Sweden that rate indicates an incidence of approximately 225 children each year. On the basis of this, the prevalence of children (aged 0-18 years) being born to women with intellectual disabilities is estimated at about 4,050.
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| 2. |
- Olsson, Malin Broberg, 1971, et al.
(författare)
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Depression in mothers and fathers of children with intellectual disability
- 2001
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 45:Pt 6, s. 535-43
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Tidskriftsartikel (refereegranskat)abstract
- Parental depression was assessed using the Beck Depression Inventory (BDI) in 216 families with children with autism and/or intellectual disability (ID), and in 214 control families. Mothers with children with autism had higher depression scores (mean = 11.8) than mothers of children with ID without autism (mean = 9.2), who in turn, had higher depression scores than fathers of children with autism (mean = 6.2), fathers of children with ID without autism (mean = 5.0), and control mothers (mean = 5.0) and fathers (mean = 4.1). Forty-five per cent of mothers with children with ID without autism and 50% of mothers with children with autism had elevated depression scores (BDI > 9), compared to 15-21% in the other groups. Single mothers of children with disabilities were found to be more vulnerable to severe depression than mothers living with a partner.
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| 3. |
- Danielsson, Henrik, et al.
(författare)
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What am I doing in Timbuktu: Person–environment picture recognition for persons with intellectual disability
- 2006
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 50:2, s. 127-138
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Tidskriftsartikel (refereegranskat)abstract
- Background The aim of this study was to examine the effects of familiarity of depicted persons and environments in recognition of photographs for pupils with different degrees of intellectual disability (ID). Method Forty-five pupils with ID participated. Results An interaction effect between the two variables, person and environment, was found in addition to main effects for both the variables. Pictures of the test person himself or herself in familiar environments were easier to recognize than in unfamiliar environments, whereas the opposite was found for pictures of other familiar persons. No interaction effects of degree of ID were found. Conclusions The interaction pattern is explained in terms of absent, present or implausible semantic associations between the person and the environmental context. The results are discussed in relation to augmentative and alternative communication with photographs.
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| 4. |
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| 5. |
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| 6. |
- Bergström, H., et al.
(författare)
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Psychometric evaluation of a scale to assess satisfaction with life among people with intellectual disabilities living in community residences
- 2013
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 57:3, s. 250-256
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Tidskriftsartikel (refereegranskat)abstract
- Background In the context of a health intervention among people with intellectual disabilities (ID), there was a need to assess satisfaction with some aspects of life, in order to monitor both potential positive and negative effects of the intervention. The aim of the present study was to develop and evaluate an easily administered scale for assessing satisfaction with home environment and leisure time among people with mild or moderate ID, living in community residences. Methods A number of questions were constructed to measure satisfaction with home environment and leisure time. The questions were answered by 132 adults with mild or moderate ID, living in community residences in Sweden. The dimensionality of the scale was evaluated by factor analysis, and the reliability was estimated using Cronbach's alpha coefficients. Results The analysis supported a four-factor solution with 12 items. The four factors were: (I) Satisfaction with housing environment; (II) Satisfaction with life; (III) Satisfaction with meals; and (IV) Satisfaction with recreational activity. The four factors explained almost 70% of the variance in the data set. Cronbach alpha coefficients for all scales were above 0.70, indicating that the reliabilities of the scales were satisfactory. Correlations between the four sub-scales ranged from 0.06 to 0.52, indicating low to moderate inter-correlations between the four sub-scales. Conclusion The scale has fairly good psychometric properties and is easy to administer. The scale, which can be further improved, can be an important resource in health intervention studies.
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| 7. |
- Cederborg, Ann-Christin, 1952-, et al.
(författare)
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Interviewing alleged victims with intellectual disabilities
- 2008
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 52:1, s. 49-58
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Tidskriftsartikel (refereegranskat)abstract
- Background: When interviewing alleged victims of crime, it is important to obtain reports that are as accurate and complete as possible. This can be especially difficult when the alleged victims have intellectual disabilities (ID). This study explored how alleged victims with ID are interviewed by police officers in Sweden and how this may affect their ability to report information as accurately as possible. Methods: Twelve interviews with 11 alleged victims were selected from a larger sample. The complainants were interviewed when their chronological ages ranged from 6.1 to 22years. A quantitative analysis examined the type of questions asked and the numbers of words and details they elicited in response. Results: Instead of open-ended questions, the interviewers relied heavily on focused questions, which are more likely to elicit inaccurate information. When given the opportunity, the witnesses were able to answer directive questions informatively. Conclusions: Interviewers need special skills in order to interview alleged victims who have ID. In addition to using more open-ended questions, interviewers should speak in shorter sentences. © 2007 The Authors. Journal Compilation © 2007 Blackwell Publishing Ltd.
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| 8. |
- Cederborg, Ann-Christin, et al.
(författare)
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Repetition of contaminating question types when children and youths with intellectual disabilities are interviewed
- 2009
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Ingår i: JOURNAL OF INTELLECTUAL DISABILITY RESEARCH. - : Wiley. - 0964-2633 .- 1365-2788. ; 53, s. 440-449
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Tidskriftsartikel (refereegranskat)abstract
- The present study examined the effects of repeating questions in interviews investigating the possible sexual abuse of children and youths who had a variety of intellectual disabilities. We predicted that the repetition of option-posing and suggestive questions would lead the suspected victims to change their responses, making it difficult to understand what actually happened. Inconsistency can be a key factor when assessing the reliability of witnesses. Case files and transcripts of investigative interviews with 33 children and youths who had a variety of intellectual disabilities were obtained from prosecutors in Sweden. The interviews involved 25 females and 9 males whose chronological ages were between 5.4 and 23.7 years when interviewed (M = 13.2 years). Six per cent of the questions were repeated at least once. The repetition of focused questions raised doubts about the reports because the interviewees changed their answers 40% of the time. Regardless of the witnesses abilities, it is important to obtain reports that are as accurate and complete as possible in investigative interviews. Because this was a field study, we did not know which responses were accurate, but repetitions of potentially contaminating questions frequently led the interviewees to contradict their earlier answers. This means that the interviewers behaviour diminished the usefulness of the witnesses testimony.
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| 9. |
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| 10. |
- Frid, Christina, et al.
(författare)
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Mortality in Down's syndrome in relation to congenital malformations
- 1999
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 43:3, s. 234-241
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Tidskriftsartikel (refereegranskat)abstract
- Down's syndrome (DS) is the most common form of intellectual disability. The syndrome is characterized by congenital malformations, especially of the heart and gastrointestinal tract, which can result in high mortality rates in the affected population. Many improvements have been made in the medical treatment of this syndrome during the past few decades and the survival of individuals with DS has increased in the industrial world. The aim of the present study was to investigate mortality in relation to congenital malformations. Medical records from all liveborn children with DS delivered between 1973 and 1980 in northern Sweden were studied, and malformations and causes of death were recorded. Out of the 219 children included in the study, a congenital heart defect was reported in 47.5% of subjects, 42.1% of whom had complete atrioventricular septal defect. Gastrointestinal tract malformations were present in 7.3% of subjects, and was frequently associated with a cardiac malformation and a very high mortality rate. Other major and minor congenital anomalies were present in 5.5% and 5.5% of subjects, respectively. In the 14.5-year follow-up of 213 children, the rate of survival was 75.6%. Mortality rates within one and 10 years after birth were 14.6% and 23.5%, respectively. Mortality within 10 years differed significantly between children with (44.1%) and without (4.5%) a congenital heart defect. A very high mortality rate was observed among children with a congenital heart defect, especially when it was combined with a gastrointestinal malformation.
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| 11. |
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| 12. |
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| 13. |
- Gustavson, Karl-Henrik, et al.
(författare)
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A follow-up study of mortality, health conditions and associated disabilities of people with intellectual disabilities in a Swedish county
- 2005
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 49:12, s. 905-914
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In the planning of services and health care for individuals with intellectual disability (ID), information is needed on the special requirements for habilitation and medical service and associated disabilities. MATERIAL AND METHODS: An unselected consecutive series of 82 adult persons with ID was studied. The medical examination consisted of the individual's health condition, associated impairments and disabilities. Medical and habilitation services and support were studied. RESULTS: The results indicated that 71% of the persons in the series had severe and 29% mild ID. Forty-seven per cent of the persons with severe ID and 35% of those with mild ID had one or more additional central nervous system (CNS) disabilities. Of the persons with ID, 99% had access to a family doctor and 84% attended regular health visits. Notably, half of persons were referred to a specialist examination as a consequence of their present medical examination. Half of the persons with mental health problems were previously undiagnosed and only a few of these had access to a psychiatrist. CONCLUSION: Our study clearly demonstrates the magnitude and importance of neurological and psychiatric impairments in ID. The findings suggest a strong need for multidisciplinary health service.
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| 14. |
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| 15. |
- Hedov, Gerth, et al.
(författare)
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Sickness abscense in Swedish parents of children with Down's syndrome : relation to self-perceived health, stress and sense of coherence.
- 2006
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 50:7, s. 546-552
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Tidskriftsartikel (refereegranskat)abstract
- Background The aims of present study were to study sickness absence among Swedish parents of children with Down's syndrome (DS) and to compare their rates of absence with those of control parents. Sickness absence data for 165 DS parents were compared with those for 174 control parents; all data were for the period 1997-2000. Sickness absence rates were also related to parental self-perceived health, stress and sense of coherence. Methods The self-administrated measures of parental self-perceived health, stress and sense of coherence were compared with the number of days of sickness absence. Results In about two-thirds of the parents in both the study and the control group, no days of sickness absence were registered. Six of the DS parents had remarkably large numbers of days of sickness absence (more than 100 per year). None of the control parents had such high sickness absence rates. It is speculated that there is a small group (less than 5%) of parents who are more vulnerable to the birth of a child with DS. Apart from these six DS parents, sickness absence was not more frequent among the DS parents than among the control parents. DS parents stayed at home to care for their sick DS child three times more often than control parents did for their non-disabled child. DS fathers took greater responsibility in the care of their temporarily sick child and stayed at home to care for the child even more often than control mothers did. DS parents with sickness periods experienced small deterioration in self-perceived health, significantly higher stress and decreased sense of coherence in comparison with parents without sickness periods. Conclusion There was a great similarity in sick leave rates due to one's own sickness between DS and control parents, but a small group of DS parents (< 5%) may be more vulnerable. DS fathers stayed at home to care for their sick DS child remarkably often.
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| 16. |
- Hedov, Gerth, et al.
(författare)
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Sickness absence in Swedish parents of children with Down's syndrome : relation to self-perceived health, stress and sense of coherence
- 2006
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Ingår i: Journal of Intellectual Disability Research. - 0964-2633 .- 1365-2788. ; 50:7, s. 546-552
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The aims of present study were to study sickness absence among Swedish parents of children with Down's syndrome (DS) and to compare their rates of absence with those of control parents. Sickness absence data for 165 DS parents were compared with those for 174 control parents; all data were for the period 1997-2000. Sickness absence rates were also related to parental self-perceived health, stress and sense of coherence. METHODS: The self-administrated measures of parental self-perceived health, stress and sense of coherence were compared with the number of days of sickness absence. RESULTS: In about two-thirds of the parents in both the study and the control group, no days of sickness absence were registered. Six of the DS parents had remarkably large numbers of days of sickness absence (more than 100 per year). None of the control parents had such high sickness absence rates. It is speculated that there is a small group (less than 5%) of parents who are more vulnerable to the birth of a child with DS. Apart from these six DS parents, sickness absence was not more frequent among the DS parents than among the control parents. DS parents stayed at home to care for their sick DS child three times more often than control parents did for their non-disabled child. DS fathers took greater responsibility in the care of their temporarily sick child and stayed at home to care for the child even more often than control mothers did. DS parents with sickness periods experienced small deterioration in self-perceived health, significantly higher stress and decreased sense of coherence in comparison with parents without sickness periods. CONCLUSIONS: There was a great similarity in sick leave rates due to one's own sickness between DS and control parents, but a small group of DS parents (<5%) may be more vulnerable. DS fathers stayed at home to care for their sick DS child remarkably often.
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| 17. |
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| 18. |
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| 19. |
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| 20. |
- Kottorp, Anders, 1965-, et al.
(författare)
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Validity of a performance assessment of activities of daily living for people with developmental disabilities
- 2003
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Ingår i: Journal of Intellectual Disability Research. - : Wiley-Blackwell. - 0964-2633 .- 1365-2788. ; 47:8, s. 597-605
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Since clients with different types of developmental disabilities often experience difficulties in activities of daily living (ADL), it is critical that assessments of ADL are evaluated in order to ensure that one can make valid judgements based on the results of the appraisal. The purpose of the present study was to evaluate the validity of a specific performance assessment instrument, the Assessment of Motor and Process Skills (AMPS), when used by occupational therapists with clients with developmental disabilities. Unlike global ADL assessments, the AMPS is used not only to evaluate the level of ADL dependence, but also to estimate the quality of each specific action performed when a person is performing ADL tasks.METHODS: Data were gathered from 1724 participants with different developmental disabilities, including intellectual disability (ID), cerebral palsy and spina bifida. Many-Facet Rasch (MFR) analysis was used to examine person-response validity, and task and item scale validity.RESULTS: Goodness-of-fit statistics showed that the tasks and items had acceptable scale validity. The participants had acceptable person-response validity on the ADL motor scale, but had slightly lower than expected levels of person-response validity on the ADL process scale. The results indicate that clients with more severe forms of ID may have a higher proportion of different performance profiles in ADL than is expected by the MFR model of the AMPS. Since the proportion of participants who did not meet the criteria was only 3% lower than expected and in accordance with other studies, the difference may not be clinically meaningful. Otherwise, the results indicated that the AMPS is a valid tool when used with clients with developmental disabilities.CONCLUSIONS: Further research is needed to evaluate the use of the AMPS in clinical assessment and intervention planning for this group of clients.
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| 21. |
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| 22. |
- Olsson, Malin Broberg, 1971, et al.
(författare)
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Sense of coherence in parents of children with different developmental disabilities
- 2002
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 46:Pt 7, s. 548-59
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The aim of the present study was to test if Antonovsky's theory of sense of coherence can facilitate understanding: (1). individual differences in psychological adaptation in parents of children with intellectual disability (ID); and (2). why parents of children with ID generally experience higher levels of stress and depression than parents of children who develop normally. METHODS: Sense of coherence (SoC) and depression were assessed using the short SoC scale (13 items) and the Beck Depression Inventory in 216 families of children with ID and/or autism, and in 213 control families. RESULTS: It is argued that: (1). parents of children with ID with low SoC are at increased risk for developing depression compared to control parents with low SoC not experiencing this stressor; and (2). the life situation of parenting a child with ID may have a negative impact on parents' SoC levels that, in turn, will make them more vulnerable to experiencing stress and depression. CONCLUSION: The SoC theory is valuable in understanding individual differences in psychological adaptation in parents of children with ID.
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| 23. |
- Olsson, Malin Broberg, 1971, et al.
(författare)
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Socioeconomic and psychological variables as risk and protective factors for parental well-being in families of children with intellectual disabilities
- 2008
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 52:12, s. 1102-1113
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Tidskriftsartikel (refereegranskat)abstract
- Background: The first aim was to estimate the extent to which differences in well-being in parents of children with and without ID in Sweden can be accounted for by differences in the presence of the risk factors; (1) Child disability (2)socioeconomic disadvantage (3) household composition (Many children to care for, low age of the target child, and single parenthood) and (4) parental characteristics (being a woman, low age and poor subjective overall health). The second aim was concerned with individual variation in well-being within the group of parents of children with ID. The aim was to estimate if protective factors such as parental personality characteristics (sense of coherence), perceived positive impact of the child and satisfaction with participation in different arenas of life explained variation in well-being in mothers and fathers of children with ID over and above that explained by the risk factors. Method: Parents of children with ID (62 mothers and 49 fathers) and control children (183 mothers and 141 fathers) completed mailed surveys on well-being, socioeconomic situation, health, sense of coherence, satisfaction with participation in different arenas of life and the child’s impact on the family. Results: The results showed that mothers of children with ID had lower levels of well-being than fathers and control parents, but the presence of a child with ID did not in itself predict poorer maternal well-being, rather differences in economic hardship, number of children and self-rated health were the strongest predictors for well-being. It was further found that 67,7 % of the mothers of children with ID scored within the high well-being group. The predictive power of the model increased significantly for both fathers and mothers when protective factors were added to the model (42 and 78% explained variance compared to 25% with only risk factors) Conclusions: Well-being of parents with a child with ID is dependant upon the interplay of risk and protective factors and research needs to address these variables simultaneously.
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| 24. |
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| 25. |
- Sonnander, K, et al.
(författare)
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Classification, prevalence, prevention and rehabilitation of intellectual disability : an overview of research in the Peopls´s Republic of China
- 1997
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 41:2, s. 180-192
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Tidskriftsartikel (refereegranskat)abstract
- The People's Republic of China is a developing country with all the problems and challenges that face such countries all over the world. Progress has been hampered by scarcity of resources, and a lack of relevant information and appropriate skills, as well as by the stigma traditionally attached to people with intellectual disability. The present rapid economic development has made possible further improvement and expansion of educational opportunities, and health and rehabilitation services. According to a recent census and sample surveys conducted in the People's Republic of China, the overall prevalence rate of people with disabilities was estimated to 4.9%. Thus, China has more individuals with disabilities than any other country in the world. According to these figures, the prevalence of intellectual disability in the population is = 1%. For children younger than 14 years of age, the prevalence is around 2 %, which accounts for 66% of all handicapped children, making it the most frequent childhood disability. Today, the existing medical facilities, and educational and social welfare organizations cannot meet the tremendous need of care and services. The problems of the large number of disabled children and adults are a major challenge for contemporary Chinese society. This paper is devoted to research pertinent to intellectual disability in China. With a few exceptions, only publications in the English language were included in this review, which makes the overview selective rather than comprehensive. Publications on classification systems and diagnostic criteria, screening methods and assessment instruments, prevalence rates, aetiology and risk factors, prevention and intervention efforts, special education, and families with children with intellectual disability are presented.
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| 26. |
- Umb-Carlsson, Õie, et al.
(författare)
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Living conditions of adults with intellectual disabilities from a gender perspective
- 2006
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Ingår i: Journal of Intellectual Disability Research. - Oxford : Blackwell Publishing Ltd. - 0964-2633 .- 1365-2788. ; 50:5, s. 326-334
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The role of gender has been a neglected issue in research on intellectual disability (ID). People with ID are generally treated as a homogenous group that are largely categorized by their level of ID. This study compared living conditions of women and men with ID and related the results to similarities and differences among the general population in corresponding age groups. METHODS: Persons with ID born in Uppsala County between 1959 and 1974 constituted the study sample. Information on the living conditions of 110 persons with ID was collected using questionnaires completed by relatives and staff. Information on living conditions of the general population was obtained through national welfare statistics conducted by Statistics Sweden (SCB). RESULTS: In both samples corresponding diversities were revealed for type of employment/daily activities, where women worked in traditional female job sectors and men were occupied with traditional male jobs. Women and men with ID participated to about the same extent in recreational and cultural activities and on only four of the 19 activities listed in the questionnaire (visits to the cinema and library, reading books and practising hobbies alone) significant differences were observed. Among women and men in the general population, we found gender-related differences in 13 of the activities listed. However, with the exception of women more frequently visiting the library and reading books, the two samples demonstrated no corresponding gender-related differences. For the remaining six domains (finances, family and social relations, housing, transport, community participation and personal safety), no differences were noted between women and men with ID. This finding contrasted sharply with the differences found between women and men in the general population. CONCLUSIONS: Surprisingly, the comparison yielded few differences in living conditions between women and men with ID compared with those found in women and men of the general population. This finding suggests that people with ID were treated as gender-neutral persons rather than as women and men with individual preferences and needs. Thus, it appears that having ID is a more important determinant than gender regarding living conditions for women and men with ID.
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| 27. |
- Wigren, M, et al.
(författare)
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ADHD symptoms and insistence on sameness in Prader-Willi syndrome
- 2005
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 49:6, s. 449-456
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Tidskriftsartikel (refereegranskat)abstract
- Background: Apart from a pervasive eating disorder, the Prader-Willi (PWS) syndrome is characterised by a distinct behavioural profile comprising maladap-tive behaviours, obsessive-compulsive traits and skin picking, all included in the PWS behavioural phenotype. This study presents a further delineation of this characteristic behavioural profile by screening for indices of executive dysfunc-tions related to attention-deficit/hyperactivity disorder (ADHD), immature com-pulsive-like adherence to sameness and skin picking and how these features ag-gregate into symptom constellations in children and adolescents with PWS. Method: Parents of 58 individuals with PWS (aged 5 to 18 years) participated by completing Childhood Routines Inventory (CRI) and Conners Parent Rating Scale (CPRS-48). Results: Results showed that indices of ADHD and excessive in-sistence on sameness were common, comorbid and of early onset. They were both associated with conduct problems. Skin picking, appearing as a single and co-morbid symptom, was less associated with child-like compulsions and ADHD-related problems Conclusions: Findings are discussed in terms of further re-search in executive dysfunctions in PWS.
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| 28. |
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| 29. |
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| 30. |
- Åkefeldt, Arne, et al.
(författare)
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Voice, speech and language characteristics of children with Prader-Willi syndrome
- 1997
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Ingår i: Journal of Intellectual Disability and Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 41:4, s. 302-311
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Tidskriftsartikel (refereegranskat)abstract
- Eleven individuals with Prader-Willi syndrome (PWS), aged between 4 and 25 years, were compared with II non-PWS children of the same sex, age, body mass index and IQ level. Voice, speech and language skills were generally impaired in subjects with PWS. Oral motor function, pitch level and resonance were specifically disordered and clearly differentiated the two groups from each other. Certain biological perinatal factors separated subjects with PWS from other obese children and adolescents, but did not differentiate within the group with PWS and could not account for the speech/language problems. Underlying cerebral dysfunction, combined with a characteristic anatomy of the mouth and larynx in PWS, contributes to altered voice, speech and language function.
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| 31. |
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| 32. |
- Arvidsson, Jessica, 1982-, et al.
(författare)
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Upper secondary school – and then?
- 2012
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Ingår i: Journal of Intellectual Disability Research. - Chichester : Wiley-Blackwell. - 0964-2633 .- 1365-2788. ; 56:7-8, s. 709-709
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The purpose of the study is to increase the knowledge about the transition from school to working life for pupils with intellectual disabilities. In addition the purpose is to identify factors which may play a role in strengthen their position on the labor market.METHOD: The first study is quantitative and based on the cross classification of a newly created register combined with two Swedish national registers. The statistical identification highlights the situation of all students who left upper secondary school for pupils with intellectual disabilities, during the period 2001-2011. The first study includes more than 17 000 people with intellectual disabilities.RESULTS AND CONCLUSIONS: At the time for the conference we will be able to present descriptive data for e.g. how many individuals who have passed upper secondary school between 2001-2011, how many who are in the daily activity programs and how many who have ordinary jobs outside daily activity. We will also be able to describe the situation based on factors such as differences between regions and municipalities, between the sexes, and between different upper secondary school programs, etc.
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| 33. |
- Nyqvist Cech, Berith, 1949-
(författare)
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To live and stay in society : As a person with learning difficulty
- 2012
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Ingår i: Journal of Intellectual Disability Research. - Murray Hill, NJ : Wiley-Blackwell. - 0964-2633 .- 1365-2788. ; 56:7-8, s. 717-717
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Aim: Fifteen years ago an ongoing research-circle was started. We are five women and one man with learning difficulties, 30-67 years old, working with a researcher. This work is based on a wish that people with learning diffi culties have to learn about and become "visible" in society. Method: This research-circle uses the participatory action research approach, both to make the co-participants themselves "visible" in society and to learn about society. Results: The six participants have reached their goal of being "visible" – they are empowered. They say they feel good. They are known today in their society as Alobis. Conclusions: It takes good will, time and effort, but is possible for people with learning diffi culties to make a change, both for themselves and others in same situation.
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| 34. |
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| 35. |
- Alex, A., et al.
(författare)
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Assessing eating and swallowing in adults born with intellectual and motor disabilities : Face and content validity of a Swedish translation of the Dysphagia Assessment Package
- 2023
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Ingår i: Journal of Intellectual Disability Research. - : John Wiley & Sons. - 0964-2633 .- 1365-2788. ; 67:11, s. 1174-1189
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Adults born with intellectual disabilities (ID) and motor disabilities (MD) have higher risk of dysphagia and should be assessed to decrease risk of severe complications. However, standardised assessment tools in Swedish are lacking.Methods: The Dysphagia Assessment Package (DAP) was cross-culturally translated from English to Swedish (DAP-SE) and tested for content validity by an expert group. Face validity was assessed by five speech and language therapist (SLT) during meal observations (n = 10), and the clinical relevance was reported in a study-specific questionnaire.Results: The DAP-SE was culturally adapted within the process of translation and was found to contain clinically relevant aspects to assess and suggest further interventions for adults with ID and MD. Face and content validity was confirmed by the expert group.Conclusion: This study, in which the DAP-SE was tested in a small sample size, provides the first indications of the instrument's validity with respect to evaluating mealtimes, swallowing function and swallowing safety in adults born with ID and MD. The study adds to the knowledge on how to translate and culturally adapt an assessment tool to clinically assess dysphagia on a complex and vulnerable patient group.
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| 36. |
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| 37. |
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| 38. |
- Arvidsson, Jessica, 1982-, et al.
(författare)
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Intersectional perspectives on post-school occupation among young adults with intellectual disabilities in Sweden
- 2016
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Ingår i: Journal of Intellectual Disability Research. - Chichester : Wiley-Blackwell. - 0964-2633 .- 1365-2788. ; 60:7-8, s. 771-771
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Tidskriftsartikel (refereegranskat)abstract
- Aim: This study explores and analyses, from an intersectional perspective, the association between parents’ country of birth as well as their level of education and their children's type of occupation after graduating from Swedish upper secondary school for pupils with intellectual disabilities (ID).Method: This is a quantitative study based on three registers (HURPID, LSS, LISA). The analyses are based on logistic regression, interaction analysis and chi-square tests. The sample size was 12,269.Results: Children of less-educated parents tend to have paid employment and children of highly educated parents tend to participate in disability day programs. Parents’ country of birth and level of education affect the former pupils’ post-school occupation in different ways. The association between parents’ country of birth and former pupils’ occupation is modified by parents’ level of education. Conclusions: Knowledge and awareness of different background conditions among children graduating from upper secondary school for pupils with ID need to increase.
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| 39. |
- Arvidsson, Per
(författare)
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Practise Leadership in Practise
- 2019
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Ingår i: Journal of Intellectual Disability Research. - : John Wiley & Sons. - 0964-2633 .- 1365-2788. ; 63:7, s. 725-725
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Research on implementation of disability policy has to a high degree focused on policy issues and evaluating the outcome. This ongoing study focuses on organisational aspects and uses actor‐network theory (ANT) as the theoretical perspective. Methods: By teaming up with the municipal disability services in the City of Malmo, results from the study will be supplemented and adapted for implementation. By semi‐structured interviews with key persons and quantitative human resources data, this follow up study aims to map out the occurrence of functions, roles and elements associated to the concept of Practice Leadership. Results: Results from the main ANT‐study, point out the significance of how person‐centred support is governed and organised, as well as the importance of the role of front‐line managers. Further, the organising shows an arbitrary element of self‐organising, and at the same time, innovative and knowledge‐driven efforts to shape new organisational structures. One conclusion is that further efforts of implementation could benefit from elaborating current research on Practice Leadership. Implications: A strategic and long‐term collaboration between service providers, researchers and educational institutions, creates a common ground for organisational structures that are anchored and supported by the educational system. This lays a foundation for a sustainable development regarding the professionalisation of disability services.
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| 40. |
- Axmon, A, et al.
(författare)
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Health care utilisation among older persons with intellectual disability and dementia : a registry study
- 2016
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 60:12, s. 1165-1177
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Both persons with intellectual disability (ID) and persons with dementia have high disease burdens, and consequently also high health care needs. As life expectancy increases for persons with ID, the group of persons with the dual diagnosis of ID and dementia will become larger.METHOD: Through national registries, we identified 7936 persons who had received support directed to persons with ID during 2012, and an age- and gender-matched sample from the general population. A national registry was also used to collect information on health care utilisation (excluding primary care) for the period 2002-2012. Health care utilisation was measured as presence and number of planned and unplanned in-patient and out-patient visits, as well as length of stay.RESULTS: In comparison with persons with ID but without dementia, persons with ID and dementia were more likely to have at least one planned out-patient visit (odds ratio [OR] 8.07), unplanned out-patient visit (OR 2.41), planned in-patient visit (OR 2.76) or unplanned in-patient visit (OR 4.19). However, among those with at least one of each respective outcome, the average number of visits did not differ between those with and without dementia. Persons with ID and dementia were less likely to have at least one planned out-patient visit than persons with dementia in the general population sample (OR 0.40), but more likely to have at least one unplanned in-patient visit (OR 1.90). No statistically significant differences were found for having at least one unplanned out-patient or planned in-patient visit. Nevertheless, among those with at least one unplanned out-patient visit, the number of visits was higher in the general population sample.CONCLUSIONS: Persons with ID and dementia are less likely to receive planned health care than persons with dementia in the general population. They have, however, higher levels of unplanned health care utilisation. This may be an indication that the current support system is not sufficient to meet the challenges of increased longevity among persons with ID.
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| 41. |
- Axmon, A., et al.
(författare)
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Hospital readmissions among older people with intellectual disability in comparison with the general population
- 2019
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 63:6, s. 593-602
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Tidskriftsartikel (refereegranskat)abstract
- Background: Older people with intellectual disability have high multimorbidity and poor physical and mental health compared with the general population. Consequently, they have a greater need for health care. Hospital readmissions may be an indicator of the quality of health care. However, so far, only a few studies have investigated this outcome in populations of people with intellectual disability. None has focused on older people. Method: We identified a cohort of people with intellectual disability aged 55+ years and alive at the end of 2012 (n = 7936). Moreover, we established a reference cohort from the general population, one-to-one matched by sex and year of birth. Data on hospital visits during the period 2002–2012 were collected from the Swedish National Patient Register. Readmissions were defined as unplanned visits with the same diagnosis occurring within 30 days of discharge and with no planned visit for the same diagnosis during this time. Results: Compared with the general population, people with intellectual disability had increased risk of readmissions for diseases of the nervous system [relative risk (RR) 2.62], respiratory system (RR 1.48), digestive system (RR 1.40) and musculoskeletal system and connective tissue (RR 2.10). Within these diagnostic groups, increased risks were found for arthropathies (RR 3.73), disorders of gallbladder, biliary tract and pancreas (RR 1.78), other diseases of intestines (RR 1.30), and other forms of heart disease (RR 1.23). Decreased risk of readmissions was found for mental and behavioural disorders (RR 0.78) and diseases of the circulatory system (RR 0.64). Conclusions: The increased risk for readmissions related to diseases of the nervous and musculoskeletal systems has a clear relation to the prevalence of comorbidities in these areas. People with intellectual disability often also have inborn limitations and damages in these systems which with time lead to complications and risk for diseases, which can be difficult to discover. The increased risk for readmissions for disease of the respiratory system, together with the already known increased prevalence of such diagnoses and their occurrence as a cause for death, warrants further investigations and considerations of potential preventive measures. The pattern of readmissions among older people with intellectual disability cannot be explained solely by a higher prevalence of disorders in this group. Our finding of increased risks for readmissions for diseases in the digestive system could be interpreted as communication problems, which sometimes result in too rapid discharges and their consequential early readmissions.
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| 42. |
- Björne, P., et al.
(författare)
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Working On an Equal Basis With Others : analysing Policy and Practice Together With Staff and Service Users
- 2019
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Ingår i: Journal of Intellectual Disability Research. - : John Wiley & Sons. - 0964-2633 .- 1365-2788. ; 63:7, s. 717-717
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: According to Swedish legislation, persons with ID have the right to support that enables their full inclusion in society, “living like others”. One tenet, as specified in the CRPD, is the opportunity to gain a living through freely chosen work on the labour market, “on an equal basis with others.” These concepts need to be understood in relation to people with moderate to severe ID. Methods: To explore the concepts of “work” and “living like others” in support for people with moderate to severe ID, two researchers engaged staff and persons with ID in translational research. Each group met six times separately, and one time together. Results: The staff group found that the organisation lacks structures that support the implementation of the goals of the CRPD. Organisational requirements, such as legislation on public procurement, availability of buildings and other facilities, as well as staffing, are factors that need to be addressed. Values based discussions involved the question if people with ID (in general) can take on the responsibilities of work. Preliminary data show that service users are satisfied with their opportunities to choose fulfilling and meaningful activities. Implications: The CRPD must be built into the organisational structure.
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| 43. |
- Boström, Petra, 1972, et al.
(författare)
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Openness and avoidance–a longitudinal study of fathers of children with intellectual disability.
- 2014
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Ingår i: Journal of Intellectual Disability Research. - : Wiley. - 0964-2633 .- 1365-2788. ; 58:9, s. 810-821
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Tidskriftsartikel (refereegranskat)abstract
- Background Fathers' interactions with children who have intellectual disabilities (ID) or developmental delays (DD) have increased over the past few decades and may be expected to continue to increase as maternal and paternal roles, along with other gender roles, become more equal. The aim of the present study was to explore fathers' experiences of parenthood in relation to a child with ID/DD from the initial discovery of the disability to 5 years later. Methods Fathers' experiences of parenting children with ID/DD were explored in a longitudinal framework. Seven Swedish fathers of young children with ID/DD participated in a series of semi-structured interviews from 2005 to 2010, and their accounts were subjected to interpretative phenomenological analysis. Results The analysis revealed three themes: (1) An interrupted path – no longer taking things for granted, which describes the fathers' reactions to their children's diagnosis; (2) Being a good father, which describes the fathers' overall perceptions of their parenting of a child with ID/DD; and (3) Dealing with the unexpected, which describes fathers' individual ways of integrating, managing, and living with the knowledge of their child's disability over the 5 years during which fathers were interviewed. Conclusions Fathers' individual paths need to be taken into consideration when offering psychological support to families of children with ID/DD.
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| 44. |
- Boström, Petra, 1972, et al.
(författare)
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Self-reported psychological wellbeing in adolescents: the role of intellectual/developmental disability and gender.
- 2018
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Ingår i: Journal of intellectual disability research : JIDR. - : Wiley. - 1365-2788 .- 0964-2633. ; 62:2, s. 83-93
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Tidskriftsartikel (refereegranskat)abstract
- The Wellbeing in Special Education Questionnaire was developed to assess subjective wellbeing in young persons with intellectual and developmental disabilities (ID/DD) as this perspective is rarely included in research. The present study explored how ID/DD and gender are related to self-reported wellbeing among adolescents.Students with (n=110) or without (n=110) ID/DD, aged 12-16years, completed the Wellbeing in Special Education Questionnaire. Analyses of the effects of gender and disability status on peer relations and conflict, mental health, mental ill-health, school environment and family relations were carried out.The experiences of the school environment and of positive mental health aspects did not differ between students with and without ID/DD, but those with ID/DD reported more mental health problems and less positive experiences of peer relations and family. Generally, boys reported more positive experiences of school and less mental health problems than girls.Including the subjective perspective of young persons with ID/DD through self-reports can provide essential information about wellbeing that cannot be gained from proxy ratings. The results suggest both differences and similarities in self-reported wellbeing between boys and girls with and without ID/DD and potentially also in how they perceived the concepts measured.
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| 45. |
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| 46. |
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| 47. |
- Fjellstrom, Sanna, et al.
(författare)
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Web-based training intervention to increase physical activity level and improve health for adults with intellectual disability
- 2022
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Ingår i: Journal of Intellectual Disability Research. - : John Wiley & Sons. - 0964-2633 .- 1365-2788. ; 66:12, s. 967-977
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Tidskriftsartikel (refereegranskat)abstract
- Background: Individuals with intellectual disability (ID) are less physically active, have a higher body mass index (BMI) and are at greater risk for cardiovascular diseases (CVDs) than people without ID. The purpose of the study was to explore the effectiveness of a web-based training programme, consisting of 150 min of activity per week, on the health of people with ID.Method: Participants with ID living in supported accommodation (n = 28, 48% female, age = 36.4 ± 9.56 years) participated in a web-based training programme, consisting of a combination of exercises (endurance, strength balance and flexibility) of moderate intensity, 50 min, three times per week for 12 weeks. The body composition and waist circumference (WC) were measured, and questionnaires were used to assess enjoyment, quality of life (QoL) and physical activity (PA) level. Descriptive statistics and pairwise comparison pre and post intervention were carried out.Results: A total of 22 out of 28 participants completed the 12-week training intervention with 83% mean attendance of training sessions. The intensity of the PA level increased and a decrease in fat mass of 1.9 ± 2.4 kg, P < 0.001 and WC of 3 ± 5 cm, P = 0.009 were observed. Enjoyment of training sessions was 3.9 out of 5, and no differences in QoL were found.Conclusion: A web-based training programme is an effective tool for improving health parameters of people with ID and offers a new way for caregivers to enhance the PA for the target group.
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| 48. |
- Hansson, Jan-Åke, et al.
(författare)
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The Importance of a Co-Ordinated Care For Older People With Intellectual and Developmental Disability (Idd)
- 2019
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Ingår i: Journal of Intellectual Disability Research. - : John Wiley & Sons. - 0964-2633 .- 1365-2788. ; 63:7, s. 818-819
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Health problems in people with intellectual and developmental disability (IDD) are traditionally known to be common in adults of all age, with at least twice as many health problems in this group as the general ageing population. In addition, there is considerable international evidence indicating an earlier death for people with IDD compared to the general population, exacerbated by fragmentation in health care systems and resulting in poor coordination between various health care services (WHO, 2018). Methods: An evaluation was done in Sweden, to estimate the effectiveness of the health system integration for people with IDD, and quality of coordinated care by professional health care personnel who had a coordinating function. In a survey, 114 medically responsible nurses, operating in key positions in 109 municipalities throughout Sweden, were asked to assess quality of co‐ordination between various centres for social services and health‐care units for frail older people with IDD who in need of both social service and healthcare. Results: Results showed diverse coordinated care, ranging from very good to very poor cooperation between the nurses and various types of care and service units. Implications: The study findings emphasise the importance of effective coordinated care.
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| 49. |
- Heimann, Mikael, et al.
(författare)
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Children with autism respond differently to spontaneous, elicited and deferred imitation
- 2016
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Ingår i: Journal of Intellectual Disability Research. - : WILEY-BLACKWELL. - 0964-2633 .- 1365-2788. ; 60:5, s. 491-501
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundImitation, a key vehicle for both cognitive and social development, is often regarded as more difficult for children with autism spectrum disorders (ASD) than for children with Down syndrome (DS) or typically developing (TD) children. The current study investigates similarities and differences in observed elicited, spontaneous and deferred imitation using both actions with objects and gestures as imitation tasks in these groups. MethodsImitation among 19 children with autism was compared with 20 children with DS and 23 TD children matched for mental and language age. ResultsElicited imitation resulted in significantly lower scores for the ASD group compared with the other two groups, an effect mainly carried by a low level of gesture imitation among ASD children. We observed no differences among the groups for spontaneous imitation. However, children with ASD or DS displayed less deferred imitation than the TD group. Proneness to imitate also differed among groups: only 10 (53%) of the children with autism responded in the elicited imitation condition compared with all children with DS and almost all TD children (87%). ConclusionsThese findings add to our understanding of the kind of imitation difficulties children with ASD might have. They also point to the necessity of not equating various imitation measures because these may capture different processes and be differently motivating for children with autism.
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| 50. |
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